FINAL REPORT. as part of the National Visual Impairment Prevention Program. of the. Victorian Retinopathy Screening Development Project

Transcription

1 FINAL REPORT of the Victorian Retinopathy Screening Development Project as part of the National Visual Impairment Prevention Program Centre for Eye Research Australia July 2001

2 FINAL REPORT of the Victorian Retinopathy Screening Development Project as part of the National Visual Impairment Prevention Program Report prepared by Sue Lee July 2001 CERA Project Team: Dr Jill Keeffe Professor Hugh Taylor Dr Alex Harper Project Officer: Ms Sue Lee 2

3 Table of Contents GLOSSARY OF ACRONYMS...5 EXECUTIVE SUMMARY...6 Why do we need a Victorian Retinopathy Screening Development Project?...6 What is the Victorian Retinopathy Screening Development Project?...6 Key Outcomes...7 Recommendations...8 GOALS AND OBJECTIVES...14 PROJECT OVERVIEWS...15 Centre for Eye Research Australia...15 The Latrobe Community Health Service (Central West Gippsland project)...16 Victorian College of Optometry (Western Melbourne Retinopathy Screening project)...17 South West Healthcare (the Warrnambool project)...18 BASELINE DATA...21 RECRUITMENT and RECALL...25 Recruitment...25 Recall...30 SCREENING PROCESS...34 Definition...34 Screening intervals...35 Screening Sensitivity...36 The role of ophthalmologists...36 The role of non-mydriatic retinal photography...36 The role of optometrists...38 The role of GPs, diabetes educators, nurses and other allied health professionals..39 Screening considerations...39 SCREENING UPTAKE...43 Detection of diabetic retinopathy...45 HEALTH SERVICE SYSTEM...46 The Community...46 Kooris...47 General Practitioners...48 Diabetes educators...50 HEALTH PROFESSIONAL TRAINING...51 PROMOTION AND COMMUNITY AWARENESS...54 SUSTAINABILITY...59 Non-mydriatic retinal cameras...62 Optometry...63 BARRIERS...64 CONCLUSION...68 REFERENCES

4 List of Tables TABLE 1. Summary information for three local projects and their regions TABLE 2. Findings from baseline data collection TABLE 3. Demographic profile of people with diabetes screened for diabetic retinopathy. 26 TABLE 4. Profile of target population (ie. people with diabetes who have no had eyes examined ever or in the past two years) TABLE 5. Distribution of screening services..30 TABLE 6. Number of people with diabetes who reported no previous eye examination TABLE 7. Summary of strengths of local screening projects TABLE 8. Percent of target population reached..43 TABLE 9. Results from the multivariate analysis 44 TABLE 10. Number of people from target population with diabetic retinopathy...45 TABLE 11. Use of national resources by each of the local screening projects TABLE 12. Materials developed by each of the local screening projects...58 TABLE 13. For each project 61 TABLE 14. Barriers as reported by participants who had not had a previous eye examination TABLE 15. Barriers as reported by participants who had not had an eye examination in the past two years..66 List of Figures FIGURE 1. Areas in Victoria covered by the projects.20 FIGURE 2. An example of a screening program using non-mydriatic photography...35 FIGURE 3. CWG Screening project pathway of care..49 4

5 GLOSSARY OF ACRONYMS CERA CWG DEHP DR GP GPDV LEHP LOTE NDSS NH&MRC NMRC n.s. PCP VACCHO VCO VIP VRSDP WMRSP Centre for Eye Research Australia Central West Gippsland Diabetes Eye Health Promotion Project Diabetic Retinopathy General Practitioner General Practice Divisions Victoria Lions Eye Health Project Languages other than English National Diabetes Supply Scheme National Health and Medical Research Council of Australia Non-mydriatic retinal camera not significant Primary Care Partnerships Victorian Aboriginal Community Controlled Health Organisation Victorian College of Optometry Visual Impairment Project Victorian Retinopathy Screening Development Program Western Melbourne Retinopathy Screening Project 5

6 EXECUTIVE SUMMARY Why do we need a Victorian Retinopathy Screening Development Project? All people with diabetes are at risk of vision loss or blindness due to diabetic retinopathy. To prevent vision loss and blindness, early detection and timely treatment of diabetic retinopathy is required. Therefore, the National Health and Medical Research Council (NH&MRC) guidelines on the management of diabetic retinopathy recommend an eye examination at diagnosis and then at least every two years for all people with diabetes. 1 Diabetic retinopathy is asymptomatic in its early stages and vision may not be affected until the disease becomes severe and much less amenable to treatment. Laser treatment is very effective for prevention of vision loss due to diabetic retinopathy, however, laser treatment cannot restore vision that has already been lost. Therefore it is essential to detect and treat diabetic retinopathy before any loss of vision occurs. Despite the potential for the prevention of vision loss and blindness in people with diabetes, many people with diabetes do not have their eyes examined regularly. In Victoria, 48% of people with diabetes had not had visited an ophthalmologist in the past two years or ever and 51% had not visited an optometrist in the past two years or ever. 2 Overall, approximately 45% of people with diabetes in Victoria reported that they had not had an eye examination ever or in the past two years. What is the Victorian Retinopathy Screening Development Project? The National Diabetes Strategy and Implementation Plan set a goal that at least 80% of people with diabetes are appropriately screened for diabetic retinopathy 3. As part of the National Diabetes Strategy, the Commonwealth Government allocated funds 6

7 for a National Visual Impairment Prevention Program to be implemented in each of its jurisdictions. The Victorian Retinopathy Screening Development Project (VRSDP) was developed to identify and seed sustainable strategies to increase the number of people being regularly screened for diabetic retinopathy. There have been a number of Victorian based research and development projects for diabetic retinopathy in recent years. The VRSDP provided an opportunity for further application of the findings of these projects and to evaluate the implementation process. The VRSDP encouraged approaches to retinal screening that built on existing infrastructure, utilised existing expertise, and enhanced local uptake of nationally developed resources by the Diabetes Eye Health Program (see page 38). Three diabetic retinopathy screening projects were developed locally in Victoria over twelve months. Each project was tailored to meet the needs of a defined population and each project focussed on different components of the screening pathway from recruitment to education through to assessment and referral for treatment and more broadly, the management of diabetes. The focus of each project is project development, as well as screening uptake in the local community. Each screening project differed according to the target population that was identified (e.g. people from culturally diverse backgrounds versus rural populations), enabling the provision of locally appropriate services in Victoria. This evaluation of the development of the three local screening projects provided recommendations on the establishment of a retinal screening program for Victoria. Key Outcomes The three local screening projects were coordinated by the Latrobe Community Health Service, the Victorian College of Optometry, and South West Healthcare. 7

8 Results from the project coordinated by the Latrobe Community Health Service indicated that improvements in diabetic retinopathy screening rates could be achieved through intense social marketing strategies coupled with diabetic retinopathy screening by optometrists. The project was embraced by 100% of optometrists in the region. The Project coordinated by the Victorian College of Optometry found that at the beginning of the project, many GPs admitted to not being aware of the role that optometrists can play in diabetic retinopathy screening. And although GP awareness increased as a result of this project, continuing education regarding the roles of different health professionals with respect to diabetes care is needed. Key outcomes from the project coordinated by South West Healthcare included the development of a suitable approach to mobile screening for rural areas using the non-mydriatic retinal camera and an accredited training program for diabetic retinopathy screening with non-mydriatic photography. Recommendations Based on results from the VRSDP, results from previous screening projects and research in Victoria and a review of the scientific literature, eight general recommendations and 13 implementation recommendations have been formulated. The eight general recommendations are designed to outline programmatic considerations for a sustainable model of diabetic retinopathy screening in Victoria. The recommendations are listed below and repeated in the relevant Sections throughout the document. The following 13 recommendations provide guidelines for the implementation of a diabetic retinopathy screening program in Victoria. They relate more specifically to issues concerned with the development of the components of diabetic retinopathy screening for the Victorian context. The implementation recommendations have been 8

9 identified on the basis of findings arising from the three local screening projects and a review of the scientific literature. General Recommendations 1. The integral components of a screening model for Victoria include screening by ophthalmologists, optometrists, GPs and those trained in the use of a nonmydriatic camera. (Screening Process) 2. Diabetic retinopathy screening should be a part of comprehensive care for people with diabetes and embedded in the health service system. Opportunities to incorporate diabetic retinopathy screening with other relevant health initiatives (such as Division of General Practice diabetes initiatives) and events (such as National Diabetes week) should be actively sought. Results of eye examinations by ophthalmologits, optometrists and non-mydriatic photography screening programs should be communicated to the patient s GP. (Health Service System) 3. Optometrists are currently under utilised in providing diabetic retinopathy screening. Further support and promotion of optometrists as screeners for diabetic retinopathy is needed. (Screening Process, Health Professional Training) 4. As the non-mydriatic retinal camera (NMRC) offers people with diabetes who do not attend optometrists or ophthalmologists an alternative, it is an integral component to diabetic retinopathy screening for Victoria. (Screening Process) 5. The central role of the general practitioner in diabetes care should be maintained and linkages with other health services enhanced. GPs should be kept informed about diabetic retinopathy issues, awareness raising campaigns, and, where possible, their input on program design and implementation should be sought. (Health Service System) 9

10 6. Many resources, such as brochures, posters and public service announcements relating to diabetes eye health, have been produced nationally. Wherever possible, nationally produced materials should be used to ensure that people with diabetes receive a consistent message regarding the importance and timing of regular eye examinations. (Promotion and Community Awareness) 7. Materials developed for people of culturally and linguistically diverse backgrounds should be evaluated for cultural appropriateness and effectiveness (i.e. reach and impact), and be consistent with national messages. (Promotion and Community Awareness) 8. "Block bookings" could be made for people who speak languages other than English to enable interpreter services to be utilised. 9. Recall methods are integral to the continued success of regular screening. A much higher number of people with diabetes continue to have their eyes examined when reminded to do so. (Recruitment and Recall) Implementation Recommendations Optometrists 1. To increase the utilisation of optometrists for retinal screening, emphasis should be placed on Continuing education for health practitioners on their roles and abilities for diabetic retinopathy screening through accredited seminars and incentives such as CME points. Support for enhanced communication between diabetes related health professionals The creation and maintenance of linkages between optometry services and other health related professionals or organisations (e.g., diabetes educators, community health centres, Divisions of General Practice) Promoting the use of optometry through PCPs 10

11 Non-mydriatic retinal cameras (NMRC) 2. Promoting the use of non-mydriatic cameras can be done through Primary Care Partnerships (PCPs) and implemented by health workers using accredited training programs, as established in this project. 3. The viability of non-mydriatic photography for diabetic retinopathy screening depends on sustainable funding such as the creation of a Medicare item number for fundus photography. 4. Appropriate areas for screening programs using non-mydriatic retinal photography include Rural areas where accessibility and availability of optometric and ophthalmologic services may be limited and large distances to travel are a barrier. Areas where it will assist allied health professionals to incorporate diabetic retinopathy screening into routine care for their patients with diabetes. Urban areas where ophthalmologic and optometric services are available, but the proportion of people with diabetes having their eyes examined remains low. 5. Where GPs and allied health professionals wish to conduct diabetic retinopathy screening, non-mydriatic retinal cameras can be used. Recruitment 6. Statewide saturated marketing strategies should be implemented at yearly intervals in conjunction with a recognised diabetes related event, such as World Diabetes Day, National Diabetes Week, or World Sight Day. 7. For smaller townships and rural areas, a localised approach to recruit for screening is appropriate and effective. 11

12 Health Service System 8. Links and partnerships with regional health networks, community groups and health related organisations help to embed diabetic retinopathy screening in the health service system. In this project, partnerships and links established with other organisations facilitated communication between GPs, diabetes educators, optometrists and NMRC screeners, provided assistance with patient recruitment, and presented opportunities for education of consumers with diabetes and health professionals. PCPs have proved to be a good environment to promote retinal screening. Promotion and Community Awareness 9. Diabetes eye health resources are essential components to a well-planned screening program, yet constitute only one of several strategies to support program delivery. Resources developed in Victoria should be consistent with national messages. 10. Where existing materials need to be adapted, locally developed materials should be pilot tested and a) specifically state that people with diabetes who are not currently being screened at least every two years for diabetic retinopathy are targeted; b) include a health education message regarding the need for eye examinations for all people with diabetes AT DIAGNOSIS and then at least every two years; and c) list where more information can be obtained or which health professionals can conduct screening or a date and venue for screening with the NMRC. The Lions Eye Health Program Community Eye Health Kit (see page 55) provides resources for diabetic retinopathy screening and guidelines for promotion of screening sessions. 12

13 11. If translated materials are needed in the community being screened, Consultation with city councils, migrant resource centres and community leaders should be held to determine the most appropriate languages for translation. To facilitate the checking of the accuracy of content of translated materials, a person proficient in English as well as the translated language should translate (in writing) the material back into English. As discovered in this project, some languages may have different dialects or formal and informal ways of speaking. In this case, it is important to discern which dialect or style is most appropriate for the target population. Sustainability 12. An assessment of a program s effectiveness in reaching the target population should be conducted periodically to evaluate a screening program. Other issues that warrant the collection of data from screening participants include the identification of barriers to screening and information to monitor screening outcomes. 13. A kit, which provides practical advice and guidelines for relevant stakeholders (e.g. health services, Divisions of General Practice, etc) to set up diabetic retinopathy screening, should be developed and disseminated. 13

14 GOALS AND OBJECTIVES The VRSDP aimed to increase the number of people with diabetes having regular eye examinations through: 1. increased knowledge and awareness of the importance of retinal screening amongst people with diabetes; and 2. increased access of the community to retinal screening, particularly among people who face particular barriers to screening. It was through the following objectives that the aims were to be achieved: 1. Increase access to retinal screening in Victoria through the establishment or enhancement of organised programs of retinal screening involving the most appropriate and accessible local professionals. 2. Undertake community awareness, recruitment and education activities for the target populations. 3. Develop and disseminate education and support resources for targeted practitioners demonstrating linkages with the nationally focused Diabetes Eye Health Promotion Project (summarised on p. 55). 4. Develop mechanisms and establish community networks to ensure the retinopathy screening program is embedded in the health service system and is part of comprehensive management of diabetes and its complications (including appropriate referrals for the treatment and ongoing management of people with diabetes). 14

15 PROJECT OVERVIEWS The VRSDP consisted of two components. The first component was three local retinopathy screening development projects (12 months duration) and the second component was the statewide evaluation and support (14 months duration). The three local screening projects were coordinated by the Latrobe Community Health Service, the Victorian College of Optometry, and South West Healthcare. The projects that were coordinated by the Latrobe Community Health Service and South West Healthcare targeted people with diabetes who live in rural communities. The project coordinated by the Victorian College of Optometry covered the western suburbs of Melbourne, which has areas in which over 50% of the population speak a language other English at home. 4 The Centre for Eye Research Australia (CERA) was responsible for the statewide evaluation and support component. Centre for Eye Research Australia A framework for evaluation was designed by CERA in conjunction with each of the local screening projects. The evaluation, which is presented in this report, assesses the methodologies utilised by the local screening projects and provides an assessment of efficacy of the skills and services required to implement a comprehensive, statewide approach to screening for diabetic retinopathy. A database (with data manual) and core minimum data set was established by CERA for the collection of uniform data from each of the local screening projects to facilitate the evaluation. CERA also provided guidance and support to each of the local screening projects in a range of capacities. CERA conducted community-based screening for diabetic 15

16 retinopathy in both rural and urban Victoria with non-mydriatic photography from and has been involved in the evaluation of the NH&MRC Guidelines for the Management of Diabetic Retinopathy. 5, 6 CERA also collaborates with Lions to manage the Lions Eye Health Program, which is a national level initiative for education and awareness of diabetic retinopathy and glaucoma. Therefore, CERA s experience in planning and implementation of programs designed to promote community awareness of diabetic retinopathy provided a basis from which expert advice could be offered. This support ranged from training in the use of the nonmydriatic camera to modification of program designs to data collection and analysis. The Latrobe Community Health Service (Central West Gippsland project) Central West Gippsland (CWG) is located in a rural area in eastern Victoria. The Central West Gippsland screening model was coordinated by one full time project officer who organised social marketing strategies and liaised with optometrists to increase the proportion of people being screened for diabetic retinopathy. Support was received from all 18 optometrists who practice in the region and the involvement of optometrists in the design and delivery of the screening project ensured a high level of commitment and collaboration with community health, GPs and other health professionals. The project also operated in conjunction with Better Practice in Diabetes Care, which was a Division of General Practice program that aimed to improve the quality of diabetes care. Coordination with the Better Practice in Diabetes Care program reinforced protocols for the management of diabetes. The area covered by this project has a resident population of 102,802, of which approximately 2,400 people are diagnosed with diabetes. An estimated 840 people with diabetes in this area do not have their eyes examined regularly. This project screened 573 people with diabetes from June- October Of the 573 screened, 16

17 154 (27%) people with diabetes reported no eye examination ever or in the past two years. Therefore, an estimated 18% (154/840) of the target population was screened. Western Melbourne Retinopathy Screening Project The Victorian College of Optometry managed the project on behalf of a consortium comprised of individuals from: Department of Optometry and Vision Sciences, University of Melbourne Diabetes Alliance Group Optometrists Association Australia (Vic Div) Royal Melbourne Hospital Victorian College of Optometry The Western Melbourne Retinopathy Screening project (WMRSP) catchment has an unusually high percentage of people who speak languages other than English (LOTE). The project design was based on the utilisation of optometrists for diabetic retinopathy screening. People with diabetes accessed the screening program via an optometrist, GP or self-referral. When a person with diabetes presented to a GP, the GP advised a visit to a local optometrist (if the patient was not already under regular review for eye care). Any patient that presented directly to an optometrist with a need for further non-urgent referral to an ophthalmologist was referred back to the GP, thus maintaining the central role of GPs in the care of people with diabetes. The project was coordinated by one part time project manager and two part time project officers. A key outcome of this project was for GPs to be aware of and embrace optometry as a method for diabetic retinopathy screening. Key findings of the project include the need for further support for communications between health professionals that was established by this project and further education of health professionals on the role of optometrists for diabetic retinopathy screening. 17

18 This project covered the cities of Brimbank, Maribyrnong & Hobsons Bay, which have a total population of 282,000 and an estimated target population for screening of 7,755. From March- September 2000, the WMRSP collected data from 256 people with diabetes, of which 85 (33%) had not had their eyes examined ever or in the past two years. This resulted in 1.1% (85/7,755) of the target population being screened. South West Healthcare (the Warrnambool project) The Warrnambool project covered a large area in western Victoria, with half of their population scattered across rural landscape. One full time project officer conducted diabetic retinopathy screening with a non-mydriatic retinal camera. Screening with a non-mydriatic camera allowed for collaboration with general practitioners, reduction of travel time for patients with diabetes, and an opportunity to meet with a diabetes educator at the screening session. A key outcome of this project is the development of an accredited diabetic retinopathy screening training program for diabetes educators and rural nurses using nonmydriatic retinal photography. Access to diabetic retinopathy screening in rural areas is expected to increase through use of the non-mydriatic camera by rural health professionals. The region covered by this project has an estimated population of 55,518 and an estimated target population of 531 for diabetic retinopathy screening. Screening was conducted within GP surgeries and health care centres from April- September A total of 160 people with diabetes have been screened thus far and seven more screening sessions are organised for early Of the 160 people screened, 47 (29%) reported that they had not had their eyes examined ever or in the past two years. Therefore, the project has screened 8.9% (47/531) of its target population. 18

19 Table 1. Summary information for three local projects and their regions CWG WMRSP Warrnambool Population 102, ,000 55,518 Diabetes prevalence age specific* 5% age specific* Estimated n of people with diabetes 2,400 14,100 1,517 Estimated % not regularly screened for DR 35% 55% 35% Estimated n not regularly screened for DR 840 7, Target population screened** 18% 1.1% 8.9% * from reference number 7 ** Participants who did not report the date of their last examination were not included in this dataset (2.8% for CWG, 7.8% for WMRSP, and 0.6% for Warrnambool). 19

20 Figure 1. Areas in Victoria covered by the three local screening projects. Western Melbourne Retinopathy Screening Project Brimbank Metropolitan Area Maribyrnong Metropolitan Area Hobsons Bay Metropolitan Area Moyne Shire City of Warrnambool Corangamite Shire South West Diabetic Retinopathy Screening Program Baw Baw Shire Latrobe Shire Latrobe Valley Screening Project 20

21 BASELINE DATA The target population for the VRSDP was people with diabetes who had not had their eyes examined since diagnosis or had let more than two years elapse since their last eye examination. An estimation of the target group was sought in order to assess the uptake of the three local screening projects. An evaluation based on the recommendation for at least two yearly eye examinations for a project with a twelve month time frame posed inherent difficulties. Initially, the Centre for Eye Research Australia (CERA) proposed to undertake a random survey in the areas covered by the three projects (and one control area) using the National Diabetes Supply Scheme (NDSS) database and to repeat this survey after twelve months. Although using specially selected populations, such as NDSS registrants, is not a population-based method and likely to be positively skewed, this method would provide baseline estimates of the target population specific to each of the local screening projects and allow for comparison of any differences after twelve months. This survey, however, was not conducted as approval for it was not received. As a result of time lost and time constraints, the steering committee of the VRSDP agreed that in addition to the individual methods of each local screening project, baseline estimates of the target population from the Visual Impairment Project (VIP) would be used. The VIP was a population-based study of the causes and prevalence of eye disease in Victoria. Population-based studies are specifically designed such that the findings are representative of the general population. The VIP found that an estimated 55% of people with diabetes in urban areas reported no eye examination in the past two years. In rural areas, 35% people with diabetes reported that they did not have their eyes examined on a two-yearly basis. Other Australian population-based studies from which baseline data for diabetic retinopathy screening can be obtained are the Blue Mountains Eye Study and the AusDiab Study. 21

22 To calculate the respective target populations: Mulitply age specific diabetes prevalence rates by catchment population* *reference 1 Sum totals for each age group (this will result in the total population with diabetes) Mulitply the total population with diabetes by 0.35, if area is rural or 0.55 if area is urban The WMRSP did not provide age specific breakdowns of the population in their area. In lieu of an age-specific estimate for the prevalence of diabetes, the total population was multiplied by a prevalence rate of 5% in order to obtain an estimated total population with diabetes. The total population with diabetes was multiplied by 0.55 to obtain an estimate for the target population for screening. Two of the local screening projects collected baseline data specific to their catchment areas. Table 2. Findings from baseline data collection. Project Title Collection method Finding CWG screening project Information regarding the number of patients seen, how many had diabetes, and how many were screened for the first time was collected from optometrists from Dec Feb In a period of three months, optometrists screened 357/6,598 patients for diabetic retinopathy. 77 (22%) were screened for the first time. Warrnambool screening project Questionnaires that requested the same information as the core minimum data set were distributed to people with diabetes via NDSS outlets, diabetes educators and health centres. 47/200 (24%) people with diabetes reported no eye examination in the past two years or ever As part of the WMRSP, a clinical audit was conducted through the Melbourne Division of General Practice to identify current retinal screening practices of GPs in the Western suburbs. CME points were awarded as an incentive for GPs to participate 22

23 in the audit. Nine GPs have returned data and report that 37/135 (27%) of their patients with diabetes had not had an eye examination in the past two years or ever. The VIP data show that people with diabetes who live in rural areas are more likely to have had their eyes examined within the recommended interval than people with diabetes who live in urban areas. This may be because people in rural areas are more likely to access eye care services through optometrists than people who live in urban areas and this is most likely due to the efficiency of optometrist recall systems in rural areas. Several factors may explain the differences found in the baselines figures obtained from the VIP population-based study versus the data collected specifically by the projects. For example, The Northwest Melbourne Division of General Practice conducts a diabetic retinopathy screening program in an area that overlaps with the region covered by the WMRSP. Similarly, CERA conducted screening with nonmydriatic retinal photography in 1996 and 1998 in the Latrobe Valley, which overlaps with the CWG project area. In Warrnambool, the Lions Eye Health Program, which aims to increase awareness regarding diabetic retinopathy, was being piloted. These previously existing screening and awareness raising programs may have resulted in higher than expected screening compliance rates in these areas. Another possibility is that the data collected by the WMRSP and Warrnambool project is positively skewed due to sampling within specially selected populations. It is possible that the GPs who participated in the WMRSP audit were ones who more actively refer their patients with diabetes for eye examinations. Similarly, in the Warrnambool project, people with diabetes who are more proactive regarding their diabetes may be the ones regularly visit health centres or diabetes educators. While VIP data can be applied generally to the Victorian population, the data collected by the local projects should only be used for that specific area. However, the variation between the population-based data and the data collected by the local 23

24 screening projects remind us that the baseline data only provide estimates for comparison and that conclusions drawn from these estimates should be made with caution. Emphasis for the VRSDP was placed on the development of local screening initiatives (e.g. program establishment, development of local networks, marketing, etc) from which areas for action for sustainable statewide diabetic retinopathy screening for Victoria could be identified. 24

25 RECRUITMENT and RECALL Recommendation Recall methods are integral to the continued success of regular screening. A much higher number of people with diabetes continue to have their eyes examined when reminded to do so. Recruitment Past experience in Victoria has shown that targeted, versus general, recruitment strategies can result in more efficient screening for diabetic retinopathy. When recruitment strategies specified that a screening service was available for people with diabetes who have NOT had their eyes examined in the past two years nearly a three fold increase in screening efficiency was observed. This meant that a lower proportion of people with diabetes, who had already had their eyes examined in the past two years, were screened. 8 While people with diabetes may present for eye examinations for reasons other than diabetic retinopathy, screening a person with diabetes specifically for diabetic retinopathy more often than recommended results in additional cost with no additional benefit. A large percentage of the populations recruited for each of the local screening projects indicated that they had already been screened for diabetic retinopathy within the past two years. As expected, the rural populations screened (CWG and Warrnambool projects) had very low percentages of people who were born in a country other than Australia or who spoke a language other than English at home. The WMRSP screened a very high percentage of people who were born in a country other than Australia and whose main language was not English. 25

26 Table 3. retinopathy Demographic profile of people with diabetes screened for diabetic CWG WMRSP Warrnambool Number screened Age (mean) 61 yrs 61 yrs 64 yrs Age (range) yrs yrs yrs Duration of diabetes (mean) 7.1 yrs 5.3 yrs 7.8 yrs Duration (range) < 1 59 yrs < 1 42 yrs <1-45 yrs Female 304 (53%) 138 (54%) 72 (45%) Insulin treated 94 (16%) 7 (2.7%) 39 (24%) Born in Australia 425 (74%) 83 (32%) 145 (91%) English as main language at home 540 (94%) 141 (55%) 160 (100%) Currently employed 154 (27%) 43 (17%) 42 (26%) Privately insured 213 (37%) - 24 (15%) Eyes NOT examined in past two years or ever 156 (27%) 85 (33%) 47 (29%) Data from this project were insufficient to draw conclusions regarding participation by groups from culturally diverse backgrounds. However, research has shown consistently lower rates of recruitment and participation in community-based and 9, 10, 11 preventive services by groups from culturally diverse backgrounds. This supports the notion that frameworks for promotion and recruitment for diabetic retinopathy screening programs must be tailored to the community by first, background research and a demographic assessment of the target population and second, cultural appropriateness of the strategies chosen. For example, rural areas are characterised by vast distances between towns, smaller (sometimes sparsely distributed) populations, isolation, and a wide range of living settings and conditions. In lieu of a large general promotional campaign, the Warrnambool screening project used an intensive, localised approach supplemented 26

27 with advice from a local health worker for each town in which screening sessions were conducted. This was an appropriate and effective approach to recruitment for this region. On the other hand, the CWG project, also in a rural area, used saturated social marketing strategies for diabetic retinopathy screening. This strategy was appropriate for this particular screening project as it worked to raise general awareness in the community and encouraged people with diabetes to take action to have their eyes examined (i.e. visit an optometrist in the area). The development of working relationships with community members is essential for successful recruitment. Members of the community (e.g. local health workers, consumers with diabetes, community groups and organisations) can provide invaluable advice regarding appropriate and effective recruitment strategies for their area and also assist with the implementation of recruitment strategies. In particular, community members should be consulted when local resources are developed to ensure acceptability and to verify that a clear and correct message is being conveyed. On-going evaluation of a screening project through assessment of the target population being reached, including demographics and distribution, is necessary to assess what, if any, modifications need to be made. Analysis of the target population reached by the three local screening projects indicated that approximately a third of the target populations reached by the CWG and Warrnambool projects were people with newly diagnosed diabetes. It has been shown that people with diabetes who present for an eye examination soon after diagnosis are more likely to continue to have their eyes examined than people with diabetes who present for their first eye examination four or more years after diagnosis. 12 The WMRSP screened a higher percentage of people with diabetes who had previously had an eye examination, though not within the past two years. This may be due to the fact that the population that is reached by optometrists are more likely to 27

28 wear glasses and therefore more likely to have had their eyes examined. A similar trend was found in the CWG project which also utilised optometrists for diabetic retinopathy screening. When compared to baseline data estimates, the number of people with diabetes who presented for their first examination increased slightly. This may indicate that acceptance of optometry as an additional route for diabetic retinopathy screening is slow to occur or that networks between optometrists and the primary health care sector could be strengthened. It is also important to bear in mind the effects that prior screening programs or awareness raising campaigns may have on recruitment efforts. When a higher proportion of people with diabetes already access eye care services regularly, the actual target population becomes smaller and more difficult to reach. As the size of the target population becomes smaller, barriers to access may be greater for the remaining portion of the population. 28

29 Table 4. Profile of target population (i.e., people with diabetes who have not had eyes examined ever or in the past two years) CWG WMRSP Warrnambool Number screened* Age (mean) 57 yrs 59 yrs 60 Age (range) yrs yrs yrs Duration of diabetes (mean) 5.1 yrs 4.7 yrs 4.2 yrs Duration (range) < 1 59 yrs <1 30 yrs <1 20 yrs Female 77 (50%) 37 (44%) 24 (51%) Insulin treated 26 (17%) 1 (1.2%) 8 (17%) Born in Australia 114 (74%) 23 (27%) 45 (96%) English as main language at home 145 (94%) 45 (53%) 47 (100%) Currently employed 51 (33%) 17 (20%) 15 (32%) Privately insured 62 (40%) - 4 (8.5%) Eyes NOT examined ever 108 (70%) 19 (22%) 32 (68%) Eyes not examined- Newly diagnosed 54/108 (50%) 9/19 (47%) 12/32 (38%) Eyes not examined- duration > 1 yr 54/108 (50%) 10/19 (53%) 20/32 (63%) * Participants who did not report the date of their last examination were not included in this dataset (2.8% for CWG, 7.8% for WMRSP, and 0.6% for Warrnambool). 29

30 Table 5. Of 577 patients screened by 18/18 optometrists, 238 were examined in Traralgon 47 in Morwell 162 in Moe 100 in Warragul, and 26 in Drouin. Distribution of screening services. CWG Screening WMRSP Warrnambool Screening 29/36 optometrists returned In an area of 10,000 screening forms for 213 square kilometres (3 rural people with diabetes and 15 municipalities), screening GPs returned screening sessions have been held forms for 42 people with in 11 major townships (7 diabetes. The number of more townships will be GPs encompassed by the covered in 2001). project area is 293, 189 of which were contacted throughout the project. Participants with diabetes from all 21 postcodes encompassed in the project s catchment were screened. More than a third of the patients (39%) were examined at the Victorian College of Optometry. Recall Models for diabetic retinopathy screening must not only increase the number of people with diabetes who have regular eye examinations, but also seek to maintain behaviour change. A system of recall is one way to remind people with diabetes that they are due for an eye examination. In a recent study of barriers to screening among patients with diabetes who presented at the Royal Victorian Eye and Ear Hospital, it was found that patients who had an eye examination at the time of diabetes diagnosis were much more likely to continue having regular examinations. 12 Among patients who reported a previous eye examination, 36% reported their first dilated examination at the time of diagnosis and 34% reported continuing regular screening since diagnosis. Among patients who had their first eye examination four or more years after diagnosis, a third continued to 30

31 have regular eye examinations, but two thirds continued to have only sporadic eye examinations. This suggests that concentrated efforts on the recruitment of people with newly diagnosed diabetes may be worthwhile and that barriers other than knowledge of eye examinations are important. Among the local screening projects, 38-50% of the target populations screened were people with diabetes who were newly diagnosed (i.e., less than one year ago). Reminder notices have the potential to increase regularity of examinations. A study by Legorreta et al. found a 27% increase in retinal examinations after the implementation of a reminder intervention. 13 The provision of a recall system is integral to the sustainability of any diabetic retinopathy screening program to maintain regularity of eye examinations. 31

32 Table 6. examination Number of people with diabetes who reported no previous eye Project N Newly diagnosed (% of the target pop. screened) Diagnosed 1 yr or more ago CWG Screening project (n=573) WMSRP (n=256) Warrnambool Screening project (n=160) 108* 54 (50%) 51 17** 9 (47%) (38%) 20 * data missing from 3 cases ** data missing from 2 cases one participant (0.6%) in the Warrnambool project could not remember the year of diagnosis for their diabetes; 23 participants (9%) did not report their year of diagnosis in the WMRSP; and 10 participants (1.7%) did not report their year of diagnosis for diabetes in the CWG project. These participants were not included in this analysis. For two of the three VRSDP screening projects (CWG Screening project and WMRSP) optometrists managed recall for screening of their patients with diabetes. When the third screening project (Warrnambool) is completed in March 2001, they will be in a position to make recommendations for the establishment of a recall system. Previous screening with non-mydriatic photography in Victoria, however, has already shown that nearly 90% of participants continued to have their eyes examined two years after initial screening, when reminded to do so. 14 Despite the small successes of individual recall systems, a reliable national diabetes reminder service is an essential component for complete elimination of blindness due to diabetic retinopathy. In Iceland, where 90% of the population with Type 1 diabetes is registered and recalled for regular examinations, dramatic results in the prevention 32

33 visual impairment have been achieved. 15 In Australia, a National Diabetes Eye Examination Reminder Service is currently being piloted. The pilot is due for completion in March

34 SCREENING PROCESS Recommendation The integral components of a screening model for Victoria include screening by ophthalmologists, optometrists, GPs and non-mydriatic photography. Definition Screening programs are used to actively detect disease(s) or condition(s) in asymptomatic individuals. Commonly referred to as secondary prevention, screening tests are not diagnostic, but separate people who may have the condition from those who probably do not. People with a positive result from a screening test are referred to the appropriate health care practitioner for diagnosis and treatment. The difference between a screening test and a comprehensive eye examination should be made clear to both people with diabetes and health professionals. For example, in the VRSDP, the CWG and WMRS projects utilised optometrists for screening. However, optometrists provide comprehensive eye examinations. The Warrnambool project, on the other hand, developed a screening program using a non-mydriatic retinal camera. A screening program with non-mydriatic photography requires participants who have abnormalities detected in their photographs to be referred to the appropriate health professional for further assessment. 34

35 Figure 2. An example of a screening program using non-mydriatic photography. Population with diabetes with no apparent eye problems Rescreen in 2 years Screening test ie. Visual acutiy test and non-mydriatic photography Negatives = normal Positives = possible diabetic retinopathy or other pathology Reduced visual acuity (<6/12 both eyes or <6/18 one eye) No photograph(s) possible (usually due to small pupils or media opacity) Refer for diagnosis by optometrist or ophthalmologist Refer for eye examination with dilation Treatment and/or subsequent eye examination(s) as recommended by eye specialist Screening intervals Evidenced-based guidelines for the management of diabetic retinopathy have been developed by the National Health and Medical Research Council. 1 For early detection and timely treatment of diabetic retinopathy, eye examinations are recommended at least once every two years from the time of diagnosis, followed by more frequent examinations if diabetic retinopathy is detected. Due to higher prevalence of diabetic retinopathy, earlier onset of diabetes, and poor access and low utilisation of services among Aboriginal and Torres Strait Islander people, retinopathy screening is recommended at diagnosis and then at yearly intervals. 35

36 When no diabetic retinopathy is present, yearly examinations for all people with diabetes is not as cost-effective as two yearly screening as there are negligible differences in the prevention of vision loss due to regular repeat examinations. 16 It is interesting to note that while the screening forms used by the WMRSP did not provide an option for two yearly recall by optometrists (maximum recall time option was yearly), only one patient who had no abnormality detected was advised to return in two years. The WMRSP found that although optometrists generally prefer to recall patients annually, the mean time between screening for their patients was 23 months. Screening sensitivity According to guideline recommendations, sensitivity for screening for diabetic retinopathy at least every two years should be at least 60%. 1 Estimates of sensitivity reported in the literature provide a range of values above 60% for screening by ophthalmologists, optometrists and non-mydriatic retinal cameras. 17 The role of ophthalmologists Once any diabetic retinopathy beyond the classification of minimal non-proliferative diabetic retinopathy is present, routine referral to an ophthalmologist is recommended for management and treatment. 1 The role of non-mydriatic retinal photography Non-mydriatic retinal cameras offer people with diabetes who do not or cannot attend optometrists or ophthalmologists a practical alternative and can provide out-reach screening services to facilitate compliance with diabetic retinopathy screening recommendations. In the Warrnambool project, which used a non-mydriatic retinal camera (NMRC) for screening, gradable photographs were obtained from 93% of the participants with diabetes. 36

37 As a screening tool for the early detection of diabetic retinopathy, the non-mydriatic camera has many advantages. Its easy operation does not require medically trained personnel as the photographs may be assessed off site, screening services can be provided in the evenings and on weekends, it is a cost effective method of screening 18, and dilating drops are not required. In addition, its portability permits coverage of wide geographic ranges which may be particularly beneficial for screening in rural areas. The design of a screening program that uses non-mydriatic photography can be incorporated into coordinated care protocols for people with diabetes. The screening organised by the Warrnambool project arranged for a diabetes educator to be present at the screening sessions. With regards to people with diabetes from culturally and linguistically diverse backgrounds, screening programs can offer block appointments to enable the provision of interpreters during the examination. Screening with non-mydriatic photography, however, has significant establishment costs (including purchase of the camera and a station wagon), requires occupational health and safety instruction for transport of the camera, and necessitates training and maintenance of skills for camera operation. The local project that used non-mydriatic photography to screen for diabetic retinopathy were unable to take gradable photographs in 7% of the participants that presented for screening, most likely due to small pupils or media opacity. The successful uptake of this method of screening is also dependent on sustainable funding such as the creation of a Medicare item number for fundus photography. Recommendation As the non-mydriatic retinal camera offers people with diabetes who do not attend optometrists or ophthalmologists an alternative, it is an integral component to diabetic retinopathy screening for Victoria. 37